Institute of Pneumophtysiology Marius Nasta Bucharest, Romania. UMHAT Dr.Georgi Stranski Pleven Ead, Clinic for Pneumonology and

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1 LEONARDO DA VINCI PARTNERSHIPS Introducing standards of the best medical practice for the patients with inherited Alpha-1 Antitrypsin Deficiency in Central Eastern Europe We are pleased to announce that on 15 th September 2011 in our Institute started realization of intra European medical project Introducing standards of the best medical practice for the patients with inherited Alpha-1 Antitrypsin Deficiency in Central Eastern Europe. within Leonardo da Vinci actions financed from European Union. Project is conducted by Professor Joanna Chorostowska Wynimko at National Institute of Tuberculosis and Lung Diseases in cooperation with seven European partners: Hannover Medical School Hannover, Germany Institute of Pneumophtysiology Marius Nasta Bucharest, Romania PJ Safarik University, Faculty of Medicine Kosice, Slovakia Leiden University Medical Center Leiden, Netherlands UMHAT Dr.Georgi Stranski Pleven Ead, Clinic for Pneumonology and Phtysiatry Pleven, Bulgaria Vilnius University Faculty of Medicine - Vilnius, Lithuania Universitŕ Degli Studi Di Pavia Pavia, Italy The project main goal is to support development of Central Eastern European Network (CEE) for Alpha-1 Antitrypsin Deficiency (A1ATD) diagnostics and treatment that will function within European network of medical centers specializing in A1ATD. Nowadays A1ATD is the most common potentially fatal hereditary disease in adult population and also the third most common hereditary disease in Europe that is recognized in advanced stages of lung/liver disease. Due to lack of reliable epidemiological data from CEE A1ATD is not recognized as an issue by the national healthcare systems. As a result of mentioned situation awareness of the A1ATD in CEE region is very low. According to current WHO recommendations and standards published by the European Respiratory Society and American Thoracic Society the criteria of 1

2 eligibility for diagnostic testing are well established and the laboratory methods are validated. Both documents also emphasize the importance of early A1ATD diagnostic and proper medical care, in particular treatment and rehabilitation. In the light of indicated situation the primary goal is to educate respiratory professionals who could start the A1ATD diagnostic and medical care programs in their countries and further disseminate that knowledge and qualifications locally. Because of the fact that the project is designed to address specific CEE regional educational needs its four aims are: The project is tailored according to specific country needs and is divided into 3 stages: 2

3 The great advantage and main focus of the project is to create long-lasting European network of cooperation between medical institutions involved in A1ATD medical care and strengthen efforts in favor of innovative pulmonology. The network is a response to the needs of CEE countries and at the same time it would help them to participate in the broader frame of European network of medical centers specializing in A1ATD. Individualized training programmes based on the best practices from experienced centers will allow for direct and cost-effective transfer of knowledge and qualification to CEE. All those actions will improve the effectiveness of early A1ATD diagnostics and have huge positive human factor. From the beginning of the project in National Institute of Tuberculosis and Lung Diseases have taken place two meetings within our initiative. The first one was held from 11 th till 12 th of December Participants were discussing following issues: alpha-1 antitrypsin deficiency epidemiology and clinics; alpha-1 antitrypsin deficiency patients care organization; methods to diagnose alpha-1 antitrypsin deficiency; difficulties associated with conducting national diagnostic and treatment systems for patients with A1ATD. Last part of the meeting was training tour in Laboratory of Molecular Diagnostics and Immunology in National Institute of Tuberculosis and Lung Diseases. Our second event on 27 th of April 2012 took form of workshop divided into presentations and laboratory part. In the diagnostic workshop took part 14 representatives from each of participating institution which were 3

4 represented by clinicians, nurses, laboratory specialists. Presentations part concentrated on: presenting history and nowadays practise in recognition and treating A1ATD; presenting and discussing methods of constructing effective diagnostic/screening programs; acknowledging partners with laboratory diagnostic of alpha-1 antitrypsin deficiency; identifying further training needs in partners countries. Laboratory part during workshop was held in Laboratory of Molecular Diagnostics and Immunology in National Institute of Tuberculosis and Lung Diseases. At the end of the workshop partners received package of filter papers to collect blood which is being used as a main biological material to recognize A1ATD. Furthermore project provides training visits for specialists from Poland, Romania, Lithuania, Slovakia and Bulgaria in Western clinical centres specialized in A1ATD in Italy, Germany and Netherlands. It is strongly believed that the project will help to remove inequalities between European countries in access to best quality A1ATD diagnostics and medical care, increase awareness of A1ATD among medical professionals as well as patients and also implement the best cooperation practice among local A1ATD centers. Support obtained from Lifelong Learning Program funds enables to facilitate all initiatives within this project and it is beyond doubt that also promotes understanding between different nations and cultures within Europe and stimulate improvement of foreign language skills. Moreover, project is assisted by local and national non profit organizations in active promotion in medical journals and internet. Project is 4

5 going to end in the middle of 2013 but its strategic goals are to be continued and enhanced not only within established network but consequently in other medical centers related to A1ATD problem. Contact details: Project coordinator: Prof. Joanna Chorostowska-Wynimko MD PhD DSc, Scientific Director Tel.: Fax.: Address: National Institute of Tuberculosis and Lung Diseases, Laboratory of Molecular Diagnostics and Immunology, 26 Plocka str, Warsaw, Poland Project assistant: Joanna Szela Tel.: Address: National Institute of Tuberculosis and Lung Diseases, Department of Scientific Planning, 26 Plocka str, Warsaw, Poland 5

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